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Where is the Healthcare Marketing for Interstitial Cystitis?

We all understand the important role healthcare marketing plays in publicizing and educating people about major diseases, pharmaceutical advancements and medical procedure innovations.

Although this field has done a great job for many diseases such as breast cancer, diabetes and others, it has fallen short when it comes to the much needed acknowledgement, education and treatment information for Interstitial Cystitis (IC). How do I know this? Because I have it and I’ve never seen a television commercial or a mainstream health publication addressing it. So where is the healthcare marketing for this horrible debilitating disease?

Woman with questions

It's tough not having the information you need about your illness

Understanding Interstitial Cystitis (IC)

Since mainstream media outlets aren’t publicizing this disease through informative medical channels, most people have never even heard of Interstitial Cystitis. So to demystify it, IC is a chronic, severely debilitating disease of the urinary bladder.

The walls of our bladders are like our mouths and have a protective, mucosa layer to keep the bladder walls moist in order to ward off infection and encourage expansion.  For patients with IC, the mucosa layer is destroyed and does not “grow” back.  So when the bladder fills up with urine, it feels like someone is cutting you with a razor blade and then throwing alcohol on it.

There are also major issues with urinary frequency ranging from 5-25 times per day and Hunner’s Ulcers, which occur in 5 to 10% of IC patients.  Some patients may even require bladder removal (a Cystectomy) as a last resort or Urinary Diversion requiring an external bag worn outside the body to store urine.

Wikipedia: Of unknown cause, this disease has a profound impact on quality of life and can be quite disabling. Interstitial Cystitis patients may have a quality of life comparable to that of a patient with rheumatoid arthritis, chronic cancer pain, or a patient on kidney dialysis. The condition is officially recognized as a disability.

Commonly Misdiagnosed

Frequent misdiagnosis is due in part to lack of education and also lack of public information about the disease.  A recent survey of patients indicates the chance of experiencing a misdiagnosis range from 8% to 40%.  This makes misdiagnosis one of the most common types of medical mistakes.

I was consistently misdiagnosed while seeing five reputable specialists and endured several procedures within 6-months before finally receiving an accurate diagnosis. The most frustrating and disappointing part was that only 1 of the 5 specialists knew ANYTHING about IC or it’s accompanying symptoms.

If mainstream media had carried more information about it, they may have caught it sooner and I would not have endured so much pain and suffering for an entire year or go through so many procedures that yielded incorrect diagnosis. This under-publicized disease requires considerably more attention, education, and resources devoted to research.

Promoting Health Information

Why is Elmiron the only FDA-approved drug on the market for a disease that affects so many people? I believe it’s because without promotion from healthcare marketers, pharmaceutical companies may not feel the push or pressure to promote information, create clinical trials and drug developments for this disease.

Updates about Interstitial Cystitis

Healthcare marketing for Interstitial Cystitis should be updated often

Health information and promotional efforts extend to marketing materials as well, promoting in different medical environments, and addressing disease education, maintenance and even prevention. Those of you in healthcare marketing can make a powerful impact, advocating on behalf of patients like me. You have the eyes and ears of those in your hospitals, doctors offices and medical labs and we’re begging you to use them!

Image Source: Interstitial Cystitis Association

What Health Marketers Can Do For Me

Work to promote public awareness and partnership to provide Interstitial Cystitis (IC) education for the general public and for health care providers.

Help further develop and enhance communication channels to encourage information sharing among those with IC, advocacy groups and most importantly researchers and public health scientists.

The scope and responsibility of health communication providers includes health promotion to enhance the quality of life and health of individuals just like me. The Interstitial Cystitis Association is trying to do their part but healthcare marketers can assist their efforts by giving this disease the media push and exposure it needs to come to the forefront of the medical community versus the bottom of the totem pole like it is now.

Social Media Can Help

Additionally, leveraging social media would increase exposure and dialogue on channels such as Facebook, Twitter and LinkedIn. I can only imagine the positive global impact these social networks might have on patients suffering from Interstitial Cystitis as well as the medical community involved in treating them.

Over to you: Have you heard of Interstitial Cystitis? How did you find out about it?

Yvonne Barber How to Write a Great Healthcare Blog Post in 30 Minutes or Less


Yvonne Barber is the Wordsmith & Content Marketeer for Design Theory, a Florida-based web design firm that provides social media management, email, domain registration, and graphic design services. Aside from writing content for client websites, brochures, and all marketing communications Yvonne blogs weekly for Design Theory on various subjects and across several social media channels.



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